The tapestry of the life of a medically complex family

Archive for the ‘Judgement’ Category

It has come to my attention that there is some confusion about the reasons I homeschool my children. You are familiar with the medical reasons (trachs, illness susceptibility) but may not be aware that my choice is also based on the “whole child” needs of each of my children. In addition, it is in part supported by my knowledge of and experience with the US public school system’s structure & variability. For the purpose of this note, I will focus on what is right about homeschooling for my children.

Homeschooling allows for individualization of curriculum and instruction for each of my children. It allows my gifted & talented learner to stretch her abilities at her own pace, my middle ability learner to make age & grade level progress, and my challenged learner to receive appropriate instruction to move skills forward more rapidly than would be possible in a large group setting. It allows me to address developmentally & academically (MA Curriculum Frameworks) appropriate activities within a topic that captivates interest & keeps my kids motivated to keep moving forward in all curricular areas. Each of my children is learning at a good pace, demonstrating the success of their homeschool program.

With regard to social skills, my 3 children span less than 2 academic years in age. Unlike peers enrolled in traditional schooling who spend close to 5 hours a day listening to an adult or completing individual tasks at their desks, my children spend much of each day discussing interesting topics, playing interactively & encouraging each other’s learning. Although they are ‘familiar’ play partners, there is little predictable about their daily play choices & interactions. My child with an autism spectrum diagnosis is encouraged, challenged, instructed and drawn in to dynamic, sustained social interactions daily. Because they are supervised by both nurses & myself, they are regularly exposed to different levels of structure & independence, across different activities. In addition, local cousins (there are 4) visit regularly to participate in play as health allows.

Every day of the week, each child has structured & adult-directed learning activities, individually & in a group. Each completes familiar learning tasks independently, with new curriculum, on multiple days a week. They are read to, read silently & read to each other nearly every day. They do yoga, play ball games, swing, slide & run about daily. Because of their heat intolerance & health, they do tend to spend more time inside than out but have balance beams, an indoor swing & a loft slide for active indoor play as well. Homeschooling allows for spontaneous “field trips” to the beach, historical sites, birdwatching, the aquarium & movies.

As their health improves, medical status changes &/or I return to paid employment outside the home, I will continue to homeschool. I have the skills & intention to homeschool through high school or until such time as one of my children makes a valid case for their individual transition to a private or more traditional school environment that we can afford. Homeschooling is a family value that far exceeds any medical reason to do so.

I apologize when I cry. Not just to the friend who wipes his shirt with a tissue when I’m done, or the friend whose dishtowel needs the dryer after a long lament.

I apologize for each tear that escapes my eye while talking about the difficulty of awake nights spent caregiving my children. I apologize for the gasp that escapes as I talk about my son’s ride in the wagon to the apple tree, to which he could run 2 years ago. I apologize for the pause while talking to the phone nurse and describing how ill my child is again, or yet.

I apologize to my nurses when I cry from the stress, or from loss, or from injury. I apologize.

I grew up in a home where crying was a sign of ‘weakness’. Crying in the house of the Colonel was the equivalent of yelling your inadequacy from the rooftop. It was admonished. It was hidden. It was shunned.

There is a doctor my kids’ see who must also have been raised by the colonel. The notes describe significant concern about my stress. Tears fell but I continued; my kids were safe, they were (are) well-cared for, yet my stress was concerning.

I am sure I apologized. I apologized today to the phone nurse. I apologized to the doc who called me back- not because I cried then, but because I had cried.

The next time I cry, I will work not apologize. When I cry, it is because I am strong for so long. When I cry, it is because I feel so deeply. When I cry, it is to release the strain, to refill my resolve, to regain my strength. I should not apologize for that.

When I was younger I was given a book by a friend called “Do It Anyway” by Kent Keith. In it he details the Paradoxical Commandments; the first two are as follows:

“People are illogical, unreasonable, and self-centered. Love them anyway.”

“If you do good, people will accuse you of selfish ulterior motives. Do good anyway.”

I live my life by many of the principles he described within his book and am reminded almost daily of these first two- today was no exception. I find that no matter how well people purport knowing me, they certainly never seem to get why I have adopted from foster care, and why I care to again. They misunderstand my relationship to my children and cannot fathom why I do what I do.

I love my children. People who regularly read my blog may understand this, but some people do not understand loving a child who was not grown within you. I cannot explain it to those who do not understand; I can only say that I feel the same love & protectiveness for all my children, biological and adopted. I have always known I wanted to mother multiple children and that some of these children would be adopted.

As a mother of children with complex medical needs, there are challenges- daily – but these do not diminish how I feel about my children. They are not the only events in my children’s lives, but they are often what I write about. WHY is that? Because I tend to have more to write about things which challenge, things which are unsettled, things to which I need give more thought. In no way does this mean that all there is in our lives is challenge. It may be that you read about every challenge we have- and I write only twice or so weekly. So much of my time is spent living and enjoying that I don’t get a chance to write more often.

To get back to where I began, nearly every day we come into contact with someone who represents some part of the first portion of Paradox 1 “People are illogical, unreasonable and self-centered” – sometimes that person is even US! But we keep on. We continue to reach out, develop friendships, take risk, love. Thankfully it is often worth the effort to us- because the feeling or support is returned. Even when it is not, it is worth the effort, because without the risk, there would be no return.

The second Paradox, describes the way I live every aspect of my life: “If you do good, people will accuse you of selfish ulterior motives. Do good anyway.” It is the paradox of my career path as well as my family life. There will be those who judge whatever I do. People will think I try to gain attention or acclaim, or have some other self-serving motive, but I will continue to “Do good anyway”.

I parent my children because they are my children. The good that I do serves no purpose other than its needing to be done- for my children, for their future, for my own fulfillment. It is my own purpose. Judge away: it will not change me. I will continue to “Do good anyway“.

Saturday night I had a conversation with a person I knew in high school. She is reaching out and connecting after a flop of a reunion resulted in a 3-person turn out for appetizers and a beer! She talked with me about her life now, the challenges and wonderful things that have happened for her over the years, along with how amazing her daughter is. She feels that her daughter is kinder, gentler, more compassionate than she herself was growing up. She talked about how her daughter regularly asks her to travel to my facebook page to see updates or photos of my children, how she fields questions about our lives, health and how adoption works or our family came to be. She told me her daughter asked about whether I was rich and she said she explained to her that I was not. I understand that she meant with regard to monetary riches but I believe I am one of the richest women in the world.

Each day I have the privilege of watching the growth and development of my 4 children. I am there to wipe tears, celebrate accomplishments and trouble-shoot oncoming challenges. I do, as people say, “have my hands full” but each day my heart is also brimming. The struggles and challenges we face each day do not go unnoticed by me, but each day my children are well enough to stay at home, to get out of bed, to play, fight and give me a hard time- those experiences enrich my life, make me more aware of my riches than any king or dignitary from any land.

My children have brought me along on their protracted and arduous journey. They have crossed the Himalayas of childhood experience and we live at the base of yet another mountain range, but their existence has enriched my life beyond the measure of all journeys thus far. As a family, we are rich in our support of each other as we address the “richness” of challenges, breathing treatments and medical appointments. While we persist in reducing the richness of hospital visits, emergency room trips and ambulance rides, we thank the universe for providing the richness of being together, learning and growing. As a mother, however uncertain the future, each day I am rich in love, in laughter and in the most valuable of all commodities: time.